new dianosis

    • Anonymous
      April 28, 2008 at 4:50 am

      My grandson Josh was hospitalized March 10 this year with suspected GBS, He spent 6 days in the hospital with IVIg and solu-medrol IV for 5 days and had definate improvement. After a couple weeks he starting getting weaker and having tingling in his hand which he did not have the first time. After talking with his neuro he was admitted again April 4th and another 5 days of solu-medrol and IVIg. At DC he was able to walk without a walker and go up a few steps. Afer 1 weeks he started getting weaker and has continued to decline. Saw the neuro last week who is thinking he will change the dianosis to CIDP!
      At this time Josh is on no medication but has an appointment on Tuesday. He’s numbnes has gone up to his theighs and upper arm and he is dropping things. Tonight he was barely able to walk with a walker. He kept tripping over his foot because he was having like drop foot. At beginning of first admit he walked without walker but very unstable. He is feeling very discouraged and I and concerned about his continued decline.
      A few questions about treatment, do people get outpatient IVIg? How often, how many days in a row? His neuro talked about starting him on Prednisone but did not mention continuing the IVIg.
      Thanks, JoAnn

    • Anonymous
      April 28, 2008 at 5:26 am

      I get IVIg at home every three weeks. I get 30g/day (a very low dose due to kidney problems) at a rate of ~ 100mL/hour. It takes 3 days and usually runs over the weekend (just the timing of when my nurse can get here.) I’m extrememly satisfied with my home health care nurse and feel he is competent and knowledgable about IVIg and CIDP and the regular IVIg has made a huge difference in my improvement. I call it the IV-I-go-go-go juice. 😉


      P.S. Is plasmapheresis an option? He may need to do a total reset – strip out all his confused antibodies and start over. I know I resisted this when I was in the hospital but it probably would have cut down on my recovery time if I’d done it, it’s taken a LOT of IVIg to get back what I lost.

    • April 28, 2008 at 9:57 am

      How old is Josh? My son is 11 y/o and has cidp. We were dx 20 months ago. Currently we get ivig every month over 4 days 6 hours and 40 minutes each day. It has helped Kevin tremendously. Any info you get from here is so invaluable, but you must remember, each person is different and what works for one may not for another. That being said, our doc wanted to do steroids, but I refused. The obvious reasons were, cataracts, bone density loss, affecting puberty, mood swings, weight gain and so on. As I started investigating more, I realized that one of the side affects (possible) was leg weakness, so I felt it would be hard to discriminate between steroid weakness and cidp weakness. Once you are on steroids, it is hard to get off, and lateley on the site I have noticed many stating the steroids stopped working after a while. On the other hand, others have good results with steroids and minimal reaction. If a few doses of ivig alone do not work, you MAY have to include steroids in your plan. I always have that in the back of my head.

      How long has this been going on? For my son, it was about six weeks from the first symptom to treatment. He was about like your grandson from a large notor skills stand point, but his autonomic responses also were affected, constipation, urinating and breathing. We were in icu for 6 days and a regular room for 5. The reason I tell you this is because today, he plays pretty much like a normal child. I won’t lie, he has pain in the mornings and when he over does it he has alot of pain in his ankles the next day. For the most part, life is pretty good compared to what it could have been if it were MD as originally dx (cmt, a form of md with no treatment) WE HAVE TREATMENT!!!! If one does not work, another will!! Keep hope.

      We infuse at home with Coram healthcare. We love our 2 main nurses, the one is a guy, and he and Kevin shoot air soft guns in the basement, play guitar hero, etc. etc… Way better than the hospital. If you have any questions or would like to talk, you can private message me your number or I can give you mine. Good luck, there is a light at the end of the tunnel, and your family will be stronger by the time you get to it!!!
      Dawn Kevies mom

    • Anonymous
      April 28, 2008 at 11:02 am

      It does sound like your grandson Josh does have CIDP. On a more positive note, it does sound like he was responding to the IVIG as well as the solumedrol (steroid) treatments. That means that he probably has the relapsing/remitting CIDP as opposed the the progressive form. The fact he is a teen is also good, as I have been reading this forum for almost 6 years now & young people seem to make better recoveries, many even going on to complete remissions.

      Right now the most important thing for him is to get on a regular schedule of IVIG & maybe even solumedrol until his symptoms are under control. Initially it might be once a week, or every other week, or once a month; whatever it takes to get him back to normal. I am not opposed to solumedrol treatments, as I was on them for 21 months & needed them to give me back just enough to stay out of a nursing home. But I would use IVIG as a first choice of treatments, mostly because of all of the adverse side effects that Dawn mentioned.

      I really feel for your grandson, I know that at first this illness seems like the worst possible illness in the world. But as time has gone by I realize that there are much worse things once can get & at least CIDP has various treatment options. BTW I got my IVIG & solumedrol infusions at home (once I got out of the hospitals after 4 months.) I actually looked forward to my home health care nurse coming, as we became good friends. My IVIG only took 2 hours 30 minutes, but I was getting it once a week back then. My solumedrol infusions took half an hour, got both on the same day. I wish him all the best of luck, things will get better for him, trust me…

    • Anonymous
      April 28, 2008 at 11:29 am

      I agree with the others and also get IVIG at home every other week with Solumedrol. I am doing extremely well at the moment with this schedule but it is trial and error in finding something that works. I would ask about the IVIG again since it sounds like he had a nice response to it. Good luck and ask whatever questions you have! Gabrielle

    • April 28, 2008 at 11:45 am

      Just a little something I was thinking about, it is not the steroid, ivig, or pp that makes you get better, it just stops the continual demylienation and by the attacks stopping, it allows the nerves to start repairing. The process is long and only happens if the process is stopped, ie, good antibodies out produce auto antibodies.

      It takes a long time for your body to heal ITSELF, for instance, the nerves can repair at a mm a day (as mentioned, provided no further attack is happening, every time you relapse, you start from zero) So that is 365 mm a year in optimum conditions, My math stinks, but I think this is the conversion. 365mm equals 36.5 cm which converted to inches is 14.37 inches total per year that you can heal, provided there is no axon damage or further demylienation. So, as you can see, it takes a really long time. Ivig does also help with inflamation of the myelin sheath, so that too could make a person feel better and get transmission to the muscles. Kevin has just now started strengthening his muscles, I actually see some tone in his arms, calves and thighs. So whether it is gbs or cidp, you really do Get Better Slowly (GBS) with both.

    • Anonymous
      April 28, 2008 at 5:38 pm

      Thanks so much for all of the reponses. Josh is 15 yo, 16 on June 19. He had symptoms starting about mid January this year and progressed to him so weak in the lower extremities by March when he was dianosed on Marh 10. We have not discussed plasma exchange. We go to the neuro tomorrow afternoon so will see. His hand weakness started April 8 and has now increased.
      Thanks for all the support, will update tomorrow. We are in the Sacramento area, Grass Valley, California.

    • Anonymous
      April 28, 2008 at 9:14 pm

      My daughter Emily is 6 yrs old, dx’d with CIDP at 4. She required immense amounts of IVIG. She had so many ups & downs & I know how frustrating it can be for the child & the family members. A big HUG to you!

      What is the dosage that he is getting of IVIG? I recommend getting 2 grams per kg of weight every day for 5 days (that’s the loading dose) then figuring out how often he needs it. I would give him 2 grams per kg over 1 day as his maintenance dose.

      Also, I’m not sure if others have touched on this, IV Solumedrol is an infused steroid. It actually has less side effects than oral Prednisone. I am not a fan of Prednisone for various reasons. Make sure that you all RESEARCH, RESEARCH, RESEARCH before going that route. We tried it & it was horrible. I don’t recommend it for anyone but I realize that it’s a personal decision.

      If I had to make the choice I would go with IV Solumedrol over oral Prednisone any day.

      I figured this out: He was dx’d on March 10 & received IVIG & Solumedrol. He started having symptoms again on April 8th. Assuming he received IVIG on that same day of diagnosis then his last infusion was March 15th. That is 24 days after his last dose.

      IVIG has a full life of about 42 days. That means at about 21 days it’s only at half of it’s potency. Some people will start to go downwards once they reach that 1/2 way point.

      If it were me, I would ask that he receive IVIG (whatever grams he was given each day at the hospital) every 3 weeks.

      We do Emily’s infusions at home & it is SO much nicer than having to go to the hospital. I highly recommend it if it’s possible for Josh.

      What brand of IVIG does he get? That’s important info for you to know.

      Also, you need to get a gigantic binder & save EVERYTHING! You need to ask for copies of ALL medical papers, tests results, etc. You need to keep a record of every lot # of IVIG he receives also.

      I know it’s extremely overwhelming in the beginning but I PROMISE you that it gets easier. We’re 2 years into this & we don’t even think about it anymore. It just becomes your new normal life & it isn’t that big of a deal once you get everything figured out.

      Good luck!

      PS, I was just thinking about this. Make sure you are dealing with a neurologist that knows about CIDP. It just occurred to me that Josh was given steroids (the IV Solumedrol) when he was dx’d with GBS. Steroids are a BIG no-no with GBS’ers.

    • Anonymous
      May 3, 2008 at 3:12 am

      Update, Josh’s neuro had offically be changed to CIDP. He was started to Prednesone 20mg three times a day. He said he will also do IVig one a month. We can’t get in home therapy so will have to go to day treatment center. No response from the Prednisone yet. We have another appointment with neuro next Tuesday. I can see that this is going to be long haul. Now I’m trying to get setup with adaptive things to make life easier. I have been of work on disability for a heart arrythmia since this started but am having a procedure done on May 12 and that means back to fulltime work. I am feeling a real time crunch to get things done before then. Josh is home fulltime right now.

    • Anonymous
      May 3, 2008 at 8:45 am

      Hi I hope he gets more then 1 day a month of IVIG He should get the full loading dose of 5 days then every few weeks as needed more IVIG but I think maybe more then 1 treatment. Also the prednisone has some serious side effects

      Has plasmapheresis been suggested?

      I wish you all the best and keep us updated on you both.


    • Anonymous
      May 3, 2008 at 7:17 pm

      Yes, Josh will be getting a full IVig course divided into 3/5 days. I think we are starting a month but will change as needed. We go to the neur on Tuesday and will ask about solu-medrol instead of Prednisone. Thanks for all the input.

    • Anonymous
      May 3, 2008 at 10:10 pm

      Hi there,
      Yes i can imagine this is all a bit of a nightmare for you all. As the others say things do slowly get better, but it is so hard at the begining. Maybe your neuro was always suspective of CIDP but not wanting to cause alarm etc by providing the diagnosis until a few more relapses/epidsodes had a occured. I only say this in relation to the pred being given on initial treatment etc as it does seem to be quite well known that you dont give GBSers pred, and it only benefits CIDPers.
      I would be concerned however at the o pred being given. Pulse steriods (high dose usually given orally or iv at a st period eg weekly, or fortnightly) does seem to be accepted as having less long term side effects and issues and as your grandson is so young i would be asking if htis was an option etc.
      I consider myself tooo young (34) to contemplate steriods but have had no choice really as the twice weekly ivig and the immunosuppressants werent really touching me. Have been on the triple treatment of pulse prednisolone, immunosuppressants, and either twice weekly or weekly ivig as an outpatient since end oct 2007. (takes about 3 hours once a week for my IVIG and methly pred) before this i started presenting similary to your grandson and the docs were (rightly so)not wanting to throw all these drugs at me un-necassarily but unfortunately i just continued to relapse worse (about every 8 days post ivig) and worse each time until i was a quadraplegic. we then tried the above treatment regieme and there is no looking back now. Am about to do my first duathlon in 3 weeks, a year to the day that i was first admitted with ?GBS, and 6mths from learning to walk again.
      Doc Gareth Parry who is on this medical board has recently done some research which is indicative of the pulse solumedrol being a better option ie good outcome and less side effects etc. It was due to be published early this year so maybe your neuro is happy to contact him etc.
      all the best and i strongly agree with all the other comments suggesting Josh be on regular ivig, he needs to have had a full loading dose and then be on regular infusions and in close contact with neuro. A great piece of advice given from my neuro was that if i was feeling weaker for 3 days in a row get in touch with him. It is sometime hard to accept you are going down hill again or getting weaker especially when you busy etc and the mind can find ways to justify weakness etc ie over-exertion or just a bad day etc. if josh has 3 days of clumsiness or progressed symptoms – numbness etc, get him back to neuro. It does not pay to let the symptoms get worse!!!!!!!
      Kai kaha
      stay strong

    • Anonymous
      May 5, 2008 at 6:52 pm

      Thanks for the input. I found out today they Josh will be getting solu-medrol with his IVig every four weeks. I’m sure this will be adjusted as needed. This should decrease the need for the oral Prednisone. We’re hoping to get started on Wednesday this week.
      Is there a good way to find out about the research that is going on?

    • May 5, 2008 at 8:24 pm

      READ,READ AND MORE READING. Thats all I ever do. Science daily on the internet, type in random things on google search for example one time I typed in “new protocol for cidp treatment” You can be lead in all different directions. There is a symposium in Chicago nov 7,8,9 doctors that are on the boars and doc. from everywhere come and you get to ask questions. Good luck! Kevin gets his monthly dose tommoprrow and the next three days after, so Josh and Kevie will be getting them the same time!
      Dawn Kevies mom

    • Anonymous
      May 6, 2008 at 1:29 am

      Are you going to the conference or ever been to one? I really want to go. Josh walked without his walker a short distance tonight, YA!

    • May 6, 2008 at 10:10 am

      Great news about the walker!!! Yes, I am going to go. They had a mini meeting for the local people a couple of weeks ago at the facility they are planning on usung. It is a hilton resort and the rate is going to be $99. If I put my fuzz buster on and ther is no traffic, I can be there in 15 minutes. If you were planning on going, I would reccommend saving some extra time and booking another hotel after the symposium and go downtown. Chicago is an awesome palce to visit. This place is about 40-50 minutes from downtown. (hotel rates are better in Bloomingdale, no parking charge etc….) I am going to pm you some other info., so check your messages.